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Alex Clarke - Getting by in Isolation - The Ramblings of a Duchenne Dad

As I sit here on day 92 of lockdown, I feel the need to put the proverbial 'pen to paper'. What do I really want to say? What message do I want to send? Honestly, I am not sure. So this may be a ramble of nothingness that you don't finish reading due to boredom or a raw insight into my experience, shielding with the family.

It has been a very interesting time but I will not for one minute pretend it has been easy or incredibly fulfilling. It has been tough!

I have not learned a new life-skill, unless you class baking bread as such, even though I have felt the internal pressure and perhaps a need to. But the daily repetition of hostage-style negotiation to get a 6 year old to do some school work at the same time as entertaining a sharp and witty 3 year old takes its toll. So the energy to put the ideas in my mind into practice is severely diminished.

Don't misread what I am saying, I love spending time with my boys but as every parent will tell you, when the only words you hear, every 15-20 minutes throughout the day are, 'I want a snack' your patience wears thin. As such, the daily snack box was introduced, a selection of snacks they had free access to, but once they are gone, they are gone, on top of that they can have unlimited fruit. Brilliant idea you may think, it was until they want every piece of fruit either peeled or cut up!


Need I say more? Any parent who has been doing this knows the scenario, now try this with a boy who is already behind his peers, by estimations probably around 12-16 months behind. The Google Classroom overload was staggering and as Ben usually has a 1-1 Teaching Assistant, I quickly realised that my OFSTED Rating was 'INCOMPETENT'. This led to a no stress, no tantrums approach. We get as much done as possible, we are all experiencing enough mental trauma, no need to add to it. That said, the daily call for any school work is met with a groan. I have learned to make Ben's lessons as fun as possible but as we go deeper and deeper into this it is becoming more and more difficult.

The Mental Health of the Boys (and their parents)

What has the impact been of being cooped up in the house for this long? Maybe the question should be, what will the long term impact be?

Being away from your friends, socialising, playing, learning in a structured environment, doing something different rather than the same thing or at least doing the same thing somewhere different. Ben starts nearly every sentence now with, 'Imagine if...' which can be followed with the most normal of things, like, 'we rode my trike all the way up to the shop', or may be followed by a very long monologue of travelling to Mars. I much prefer the latter, at least he is dreaming of things to do, or something he really wants to do.

I can feel the impact on myself, the insomnia, the anxiety, feeling the worry in the pit of my stomach but not knowing how to deal with it. As I write these words, maybe I've waited 92 days too long, as this feels cathartic. As for the long term effect, only time will tell, I just hope that the new normal will not be too far from the old, just with more self-awareness and appreciation for the simple things we may have taken for granted in the past.

The Physical and Medical Impact

In the last couple of weeks, the physical impact on Ben has started to become more apparent, he's tired more, complains of sore muscles and even though we have ventured out into the secluded woods in the Oxfordshire countryside, which he initially loved, he has become more resistant to it. During this time Ben has missed the following appointments:

  • 6 Monthly Neurology

  • Annual Cardiology (ECG)

  • Annual DEXA Scan and spinal x-ray

  • Orthotics fitting for new night splints

  • Annual Gastroenterology

  • Blood test to check his Vitamin D levels

  • Monthly Physiotherapy

These are all vital to monitor the impact of Duchenne on his body, a condition that progressively wastes all muscle groups. We need the professionals to physically see him to assess where he is, if there is a decline, and to take any steps to slow the progression. We are not alone, this is the case for ALL with Duchenne and other life-limiting conditions. I truly feel this is an area that is probably adding the most to my anxiety.

What Else?

There have been some amazing moments and we will look back on this strange time and despite the challenges, I hope we will look back fondly. Ben and Zak are both Lego masters, every set has been dismantled and rebuilt numerous times, to the extent that some are now built without instructions. It seems Zak is something of an artist, with his first framed work going up in the house.

Ben is talking about what he wants to do in the future, be a firefighter and a scientist, so he can put out fires on Earth and go to the International Space Station, he has also worked out that in 20 years, when they predict they will get humans to Mars, he will be 26 (so maybe my maths teaching isn't too bad), the perfect age to go. Hearing these dreams is uplifting yet gut-wrenching at the same time, I know he will not be physically able to be a firefighter, and that space travel is unlikely for him, but being a scientist involved in getting others to Mars is an aspiration he can achieve.

But the most difficult part for me to come to terms with is - will he live long enough to achieve them?

You can read more from Alex's blog here.

Published on 23 June 2020

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